Footsteps therapy uses trampolines to help get confidence back
Tuesday August 25,2009
Minty Hoyer Millar, 17, who has cerebral palsy, has become mobile with the aid of a strange device called the spider. Her mother Pip, 49, tells her story
Minty was my fourth child so I was aware she was not progressing as she should. I saw she was struggling to achieve the usual baby and toddler milestones. At 12 months she was assessed and we were told she was physically and mentally handicapped and would never achieve beyond the capabilities of a four–year-old. I was devastated.
Doctors weren’t sure what was wrong. Cerebral palsy, a neurological disorder affecting balance and movement was confirmed when Minty was 22 months old. I learned it leaves sufferers with little or no mobility. We were told we’d have to wait more than a year to see an NHS physiotherapist. I researched the condition to see what other help was available but it became clear we would have to do all the work to make sure she had the best life possible.
‘It gives kids a confidence boost'
As Minty got older she was very floppy. By the time she was nine she could only crawl. She couldn’t stand, had no balance and very little speech.
I felt sad when I looked at her. I wanted her to be part of everything but she couldn’t. It was frustrating and upsetting because I knew from day one that she could achieve much more. With three other children, William now 22, Thomas, 20, and Henry, 19, we just had get on with it.
I spent my spare time finding out more about treatments around the world. I heard about a therapy called Footsteps in the city of Koszalin, north-west Poland. It uses exercises that focus on improving movements such as rolling over, supporting, reaching, grasping and holding.
It also teaches patients to shift their body weight and move from one place to another, enabling greater mobility and independence and encouraging increased self-confidence. All sorts of apparatus including balls, rolls, trampolines and ladders are used. We begain travelling to Poland every other month and after a year Minty was more mobile and happier.
There we discovered a device called the spider. It is a frame with bungee ropes attached which holds the child in place while physiotherapists work on improving their muscle strength and posture. It looks like a giant spider’s web.
By supporting Minty in an upright position it allowed her to move independently. Therapists could put her body through various exercises in different positions so it could be aligned properly. This helped develop her balance. It was great fun and she enjoyed it a lot.
With it she learned to stand independently and walk a little bit. Stimulating so many different muscle groups even helped her speech.
I couldn’t help thinking it was a huge shame that so many others in the UK were missing out on the opportunity Minty had. Then in 2004, when Minty was 12, my husband Christian suggested we set up our own Footsteps centre in an outbuilding at our home in South Warborough, Oxfordshire, so that others could use the spider. I was excited about the idea. Eventually we persuaded two amazing physiotherapists Filip and Gosia to come over from Poland to work with us.
When children use the spider it can be the first time they have stood upright. It gives them a huge confidence boost and the therapists can try lots of exercises with them.
They have a new sense of freedom. The spider helps with stability and balance and the children love playing games like catching balls while using it.
Last year we set up the Footsteps Foundation charity to help families who can’t afford the treatment, which costs about £1,800 for a three-week course.
W e’ve raised more than £110,000 to date and have been thrilled to send out grants to families who would otherwise have not been able to come to us. Minty is now walking independently and is very social. Her speech is fantastic. She’s a delight and very much a teenager. She still spends four afternoons a week on the spider. It might have been hard in the beginning but once she realised how much progress she was making her motivation and determination kept her going and she’s achieved so much.
l For more information call the Footsteps centre on 01865 858 382/065 or visit footsteps.ltd.uk
l For the Footsteps Foundation charity www.footstepsfoundation.com
Interview by PENNY STRETTONDR ALISON STEWART is an Edinburgh-based GP with an interest in cerebral palsy. She says: Cerebral palsy is the name given to a group of conditions that cause movement problems. The most common type leads to stiff or rigid muscles in the limbs and can range from mild to severe. It results from damage to the brain usually before birth or from an incorrectly developed brain.
It affects about one in 400 people. Physiotherapy is the prime technique for treating cerebral palsy. It prevents muscle weakness and enhances walking and standing. Anything that improves movement and motor skills and helps to enhance a person’s life is beneficial.
28 August 2009
New electric wheelchair prototype offers greater accessibility, sporty style
A man demonstrates moving from a bed onto the new electric wheelchair on Wednesday. (Mainichi)Researchers presented an electric wheelchair prototype on Wednesday that promises to offer greater mobility while lending the conveyances a little sporty style.
The new chair, designed by the Veda International Robot R&D Center in Munakata, Fukuoka Prefecture, features a backless design to make getting on and off the machine easier, and can be maneuvered in tight spaces.
Current wheelchair models, with their backs, armrests and large wheels, tend to be difficult to get in and out of from beds and other places around the home, leading to occasional falls. Furthermore, their low seats make it difficult for people sitting in them to reach things in high places.
The new design from Veda -- set up by a number of universities from across the globe including Waseda University and Kyushu University -- is more like a scooter than a traditional chair, with two larger driving wheels and two smaller wheels, and weighs in at around 100 kilograms. The seat can be raised or lowered at the press of a button, making it easy for a single person with the use of his or her upper body to get in or out unassisted.
"It was our task to make a wheelchair that was easy to get in and out of," says Shinichiro Takasugi, a lecturer at Kyushu University and a member of Kyushu University Hospital's rehabilitation department, which participated in the new chair's development. "This is the product of a ground-breaking concept."
New features, such as obstacle-avoidance and being able to summon the chair by calling it, may be added in the future.
The electric wheelchair will run for four hours on a single charge, and if it gains approval from government authorities, will be sharing the sidewalks with other electric wheelchairs. The developers are hoping to partner with private enterprise to mass produce the chairs a year from now, at a projected retail price of 500,000 yen each.
The new chair, designed by the Veda International Robot R&D Center in Munakata, Fukuoka Prefecture, features a backless design to make getting on and off the machine easier, and can be maneuvered in tight spaces.
Current wheelchair models, with their backs, armrests and large wheels, tend to be difficult to get in and out of from beds and other places around the home, leading to occasional falls. Furthermore, their low seats make it difficult for people sitting in them to reach things in high places.
The new design from Veda -- set up by a number of universities from across the globe including Waseda University and Kyushu University -- is more like a scooter than a traditional chair, with two larger driving wheels and two smaller wheels, and weighs in at around 100 kilograms. The seat can be raised or lowered at the press of a button, making it easy for a single person with the use of his or her upper body to get in or out unassisted.
"It was our task to make a wheelchair that was easy to get in and out of," says Shinichiro Takasugi, a lecturer at Kyushu University and a member of Kyushu University Hospital's rehabilitation department, which participated in the new chair's development. "This is the product of a ground-breaking concept."
New features, such as obstacle-avoidance and being able to summon the chair by calling it, may be added in the future.
The electric wheelchair will run for four hours on a single charge, and if it gains approval from government authorities, will be sharing the sidewalks with other electric wheelchairs. The developers are hoping to partner with private enterprise to mass produce the chairs a year from now, at a projected retail price of 500,000 yen each.
27 August 2009
Mobility sufferers to benefit from horse therapy
AN inspirational woman with cerebral palsy is opening a horse power therapy centre to help people with neurological disorders improve their mobility.
Dr Dorothee Debuse has spastic diplegia – cerebral palsy which affects her legs – and first experienced the healing power of hippotherapy, a specialist physiotherapy intervention using horses, when she was eight years old.
Now she is setting up hADVERTISEMENTer own centre – Horse Power for Ability – in Titilington near Glanton after receiving more than £8,000 funding from One North East as part of the funded by the Northumberland Uplands LEADER programme which is made available through the Rural Development Programme for England (RDPE).
Dr Debuse, 38, grew up in Germany and qualified as a chartered physiotherapist in 1994 after studying at Northumbria University, where she now works as a part time lecturer.
But pursuing her love of horses and helping others through therapeutic riding remained paramount and she is now preparing to open the unique service to the public.
The project will provide three jobs for the area – a specialist physiotherapist post, a horse handler and an assistant post – with more jobs to follow in the future.
Dorothee said: "Because I have cerebral palsy I know what it feels like to be a patient so I'm in an ideal position. When I was eight years old my movement improved vastly after starting therapeutic riding - after four weeks I was able to ride a bike. My condition drove me to become a physiotherapist and after working in Germany where hippotherapy is renowned I feel very passionate about helping people with neurological problems in this region.
"Riding a horse has proved to be incredibly empowering, giving people a great deal of hope with raised self esteem and a feeling of achievement both physically and psychologically. It's beautiful to witness."
She added: "When I worked in Germany I saw some examples of really good practice and my ultimate aim is to establish a Centre of Excellence in Hippotherapy in the UK.
"There is no service like ours that I know of in the whole of the UK, there are only a handful of trained physiotherapists in this field, some of which have retired.
"People have told me that after receiving hippotherapy they 'feel like they are walking on a cloud' and these are people with real neurological problems. Other people have said that after hippotherapy 'it feels like their knees aren't tied together any more' – a few people have used those exact words.
"I get goose bumps when I know we can help people achieve such a change in their ability to move, and ultimately, in their quality of life."
Supported by her husband Stuart, Dorothee has been working with her horse to prepare him for his work, and has bought special equipment for the centre.
It is hoped that the service will be open by November.
Tom Burston, Local Action Group Co-ordinator said: "The Northumberland Uplands Local Action Group is delighted to support Dorothee in the setting up of Horse Power for Ability.
"We are trying to encourage the development of new ideas in Northumberland and Dorothee's plans are really exciting. This is going to help create jobs and opportunities that don't exist in Northumberland at present."
People interested in using the service can find out more by visiting www.horsepowerforability.com.
At present it is a private service but Dorothee hopes that when the benefits of hippotherapy become well-known in this country, it will eventually be a service offered through the NHS.
Dr Dorothee Debuse has spastic diplegia – cerebral palsy which affects her legs – and first experienced the healing power of hippotherapy, a specialist physiotherapy intervention using horses, when she was eight years old.
Now she is setting up hADVERTISEMENTer own centre – Horse Power for Ability – in Titilington near Glanton after receiving more than £8,000 funding from One North East as part of the funded by the Northumberland Uplands LEADER programme which is made available through the Rural Development Programme for England (RDPE).
Dr Debuse, 38, grew up in Germany and qualified as a chartered physiotherapist in 1994 after studying at Northumbria University, where she now works as a part time lecturer.
But pursuing her love of horses and helping others through therapeutic riding remained paramount and she is now preparing to open the unique service to the public.
The project will provide three jobs for the area – a specialist physiotherapist post, a horse handler and an assistant post – with more jobs to follow in the future.
Dorothee said: "Because I have cerebral palsy I know what it feels like to be a patient so I'm in an ideal position. When I was eight years old my movement improved vastly after starting therapeutic riding - after four weeks I was able to ride a bike. My condition drove me to become a physiotherapist and after working in Germany where hippotherapy is renowned I feel very passionate about helping people with neurological problems in this region.
"Riding a horse has proved to be incredibly empowering, giving people a great deal of hope with raised self esteem and a feeling of achievement both physically and psychologically. It's beautiful to witness."
She added: "When I worked in Germany I saw some examples of really good practice and my ultimate aim is to establish a Centre of Excellence in Hippotherapy in the UK.
"There is no service like ours that I know of in the whole of the UK, there are only a handful of trained physiotherapists in this field, some of which have retired.
"People have told me that after receiving hippotherapy they 'feel like they are walking on a cloud' and these are people with real neurological problems. Other people have said that after hippotherapy 'it feels like their knees aren't tied together any more' – a few people have used those exact words.
"I get goose bumps when I know we can help people achieve such a change in their ability to move, and ultimately, in their quality of life."
Supported by her husband Stuart, Dorothee has been working with her horse to prepare him for his work, and has bought special equipment for the centre.
It is hoped that the service will be open by November.
Tom Burston, Local Action Group Co-ordinator said: "The Northumberland Uplands Local Action Group is delighted to support Dorothee in the setting up of Horse Power for Ability.
"We are trying to encourage the development of new ideas in Northumberland and Dorothee's plans are really exciting. This is going to help create jobs and opportunities that don't exist in Northumberland at present."
People interested in using the service can find out more by visiting www.horsepowerforability.com.
At present it is a private service but Dorothee hopes that when the benefits of hippotherapy become well-known in this country, it will eventually be a service offered through the NHS.
26 August 2009
Autism and extraordinary ability
Genius locus
Apr 16th 2009
From The Economist print edition
There is strong evidence for a link between genius and autism. In the first of three articles about the brain this week, we ask how that link works, and whether “neurotypicals” can benefit from the knowledge
THAT genius is unusual goes without saying. But is it so unusual that it requires the brains of those that possess it to be unusual in others ways, too? A link between artistic genius on the one hand and schizophrenia and manic-depression on the other, is widely debated. However another link, between savant syndrome and autism, is well established. It is, for example, the subject of films such as “Rain Man”, illustrated above.
A study published this week by Patricia Howlin of King’s College, London, reinforces this point. It suggests that as many as 30% of autistic people have some sort of savant-like capability in areas such as calculation or music. Moreover, it is widely acknowledged that some of the symptoms associated with autism, including poor communication skills and an obsession with detail, are also exhibited by many creative types, particularly in the fields of science, engineering, music, drawing and painting. Indeed, there is now a cottage industry in re-interpreting the lives of geniuses in the context of suggestions that they might belong, or have belonged, on the “autistic spectrum”, as the range of syndromes that include autistic symptoms is now dubbed.
So what is the link? And can an understanding of it be used to release flashes of genius in those whose brains are, in the delightfully condescending term used by researchers in the area, “neurotypical”? Those were the questions addressed by papers (one of them Dr Howlin’s) published this week in the Philosophical Transactions of the Royal Society. The society, Britain’s premier scientific club and the oldest scientific body in the world, produces such transactions from time to time, to allow investigators in particular fields to chew over the state of the art. The latest edition is the outcome of a conference held jointly with the British Academy (a similar, though younger, organisation for the humanities and social sciences) last September.
A spectrum of belief
A standard diagnosis of autism requires three things to be present in an individual. Two of these three, impairments in social interaction and in communication with other people, are the results of autists lacking empathy or, in technical jargon, a “theory of mind”. In other words they cannot, as even fairly young neurotypicals can, put themselves in the position of another being and ask themselves what that other is thinking. The third criterion, however, is that a person has what are known as restrictive and repetitive behaviours and interests, or RRBI, in the jargon.
Until recently, the feeling among many researchers was that the first two features were crucial to someone becoming a savant. The idea was that mental resources which would have been used for interaction and communication could be redeployed to develop expertise in some arbitrary task. Now, though, that consensus is shifting. Several of the volume’s authors argue that it is the third feature, RRBI, that permits people to become savants.
Francesca Happé of King’s College, London, is one of them. As she observes, obsessional interests and repetitive behaviours would allow someone to practice, albeit inadvertently, whichever skill they were obsessed by. Malcolm Gladwell, in a book called “Outliers” which collated research done on outstanding people, suggested that anyone could become an expert in anything by practising for 10,000 hours. It would not be hard for an autistic individual to clock up that level of practice for the sort of skills, such as mathematical puzzles, that many neurotypicals would rapidly give up on.
Many, but not all. Dr Happé has drawn on a study of almost 13,000 individual twins to show that childhood talent in fields such as music and art is often associated with RRBIs, even in those who are not diagnosed as classically autistic. She speculates that the abilities of savants in areas that neurotypicals tend to find pointless or boring may result from an ability to see differences where a neurotypical would see only similarities. As she puts it, “the child with autism who would happily spend hours spinning coins, or watching drops of water fall from his fingers, might be considered a connoisseur, seeing minute differences between events that others regard as pure repetition.”
Simon Baron-Cohen, a doyen of the field who works at Cambridge University, draws similar conclusions. He suggests the secret of becoming a savant is “hyper-systematising and hyper-attention to detail”. But he adds sensory hypersensitivity to the list. His team have shown one example of this using what is known as the Freiburg visual acuity and contrast test, which asks people to identify the gap in a letter “c” presented in four different orientations. Those on the autistic spectrum do significantly better at this than do neurotypicals. That might help explain Dr Happé’s observations about coins and raindrops.
Insight, too, is given by autists themselves. Temple Grandin is a professor of animal science at Colorado State University. She also writes about her experience of being autistic. As she describes in the volume, one of the differences she perceives between her experience and that of most neurotypicals is that she thinks in images. She says her mind is like an internet search engine that searches for photographs. To form concepts, she sorts these pictures into categories. She does not, however, claim that all autistic people think like this. To the contrary, she describes two other sorts: pattern thinkers who excel at maths and music, and verbal specialists who are good at talking and writing, but lack visual skills. The latter might not qualify as autistic under a traditional diagnosis, but slip into the broader autistic spectrum.
The question of how the autistic brain differs physically from that of neurotypicals was addressed by Manuel Casanova of the University of Louisville, in Kentucky. Dr Casanova has spent many years dissecting both. His conclusion is that the main difference is in the structure of the small columns of nerve cells that are packed together to form the cerebral cortex. The cortical columns of those on the autistic spectrum are narrower than those of neurotypicals, and their cells are organised differently.
The upshot of these differences is that the columns in an autistic brain seem to be more connected than normal with their close neighbours, and less connected with their distant ones. Though it is an interpretative stretch, that pattern of connection might reduce a person’s ability to generalise (since disparate data are less easily integrated) and increase his ability to concentrate (by drawing together similar inputs).
Rain and sunshine
Given such anatomical differences, then, what hope is there for the neurotypical who would like to be a savant? Some, possibly. There are examples of people suddenly developing extraordinary skills in painting and music in adult life as a result of brain damage caused by accidents or strokes. That, perhaps, is too high a price to pay. But Allan Snyder of the University of Sydney has been able to induce what looks like a temporary version of this phenomenon using magnetism.
Dr Snyder argues that savant skills are latent in everyone, but that access to them is inhibited in non-savants by other neurological processes. He is able to remove this inhibition using a technique called repetitive transcranial magnetic stimulation.
Applying a magnetic field to part of the brain disrupts the electrical activity of the nerve cells for a few seconds. Applying such a field repeatedly can have effects that last for an hour or so. The technique has been approved for the treatment of depression, and is being tested against several other conditions, including Parkinson’s disease and migraines. Dr Snyder, however, has found that stimulating an area called the left anterior temporal lobe improves people’s ability to draw things like animals and faces from memory. It helps them, too, with other tasks savants do famously well—proofreading, for example, and estimating the number of objects in a large group, such as a pile of match sticks. It also reduces “false” memories (savants tend to remember things literally, rather than constructing a mnemonic narrative and remembering that).
There are, however, examples of people who seem very neurotypical indeed achieving savant-like skills through sheer diligence. Probably the most famous is that of London taxi drivers, who must master the Knowledge—ie, the location of 25,000 streets, and the quickest ways between them—to qualify for a licence.
The expert here is Eleanor Maguire of University College, London, who famously showed a few years ago that the shape of the hippocampus, a part of the brain involved in long-term learning, changes in London cabbies. Dr Maguire and her team have now turned their attention to how cabbies learn the Knowledge.
The prodigious geographical knowledge of the average cabbie is, indeed, savant-like. But Dr Maguire recently found that it comes at a cost. Cabbies, on average, are worse than random control subjects and—horror—also worse than bus drivers, at memory tests such as word-pairing. Surprisingly, that is also true of their general spatial memory. Nothing comes for nothing, it seems, and genius has its price.
Savant syndrome, then, is a case where the politically correct euphemism “differently abled” has real meaning. The conclusion that should be drawn, perhaps, is not that neurotypicals should attempt to ape savants, but that savants—even those who are not geniuses—should be welcomed for what they are, and found a more honoured place in society.
Wheelchair delays 'unacceptable'
A report on wheelchair services is due to be completed within weeks
Ministers have been urged to ensure that no-one in Wales has to wait longer than a year for a wheelchair.
Conservatives criticised "unacceptable delays" in providing wheelchairs for children, while Liberal Democrats urged a "minimum standard" for adults.
Health Minister Edwina Hart said she was concerned by the length of time some patients were waiting.
She said a review currently underway might recommend standards for the service across Wales.
Conservative social justice spokesman Mark Isherwood said that "unacceptable delays are leaving disabled and vulnerable people in pain and without the equipment they need to improve their quality of life".
"The health minister herself is on record as saying 'equality of access to all services is key' - we share that sentiment," he said.
"We share the concerns of Disabled Children Matter about the impact of these delays on the well-being of disabled children in Wales.
"Equality means disabled children having the same opportunities as non-disabled children in their daily lives," Mr Isherwood added.
Lib Dems called for a "minimum standard" for adult wheelchair provision, ensuring that no-one would have to wait longer than a year for a wheelchair.
'No recognised standards'
In a statement Ms Hart said: "I am concerned about the length of time some patients are waiting for their assessments and receiving their wheelchairs.
"The provision of wheelchair services falls primarily to the Artificial Limb and Appliance Service (ALAS), which is not an all-Wales service but is based around two centres in Cardiff and Wrexham.
"There are no recognised standards for wheelchair services for adults in Wales, however a review into the provision of wheelchairs and specialist seating is currently under way in Wales, where a possible recommendation may be the establishment of standards for the service across Wales.
"Senior Welsh Assembly Government officials are working with health professionals and other key stakeholders and service users to review the current provision, identify any gaps and consider how it can be improved."
Ms Hart said she would be receiving the report from the review this month.
Last March, long waits for specialist wheelchairs were criticised as "disgusting" by patients and parents in north Wales.
A total of 53 adults and children were waiting for an assessment to allow them to receive wheelchairs.
One child had been waiting for 20 months and the North Wales NHS Trust said it had cut times and was aiming to ensure no child waited more than a year.
Ministers have been urged to ensure that no-one in Wales has to wait longer than a year for a wheelchair.
Conservatives criticised "unacceptable delays" in providing wheelchairs for children, while Liberal Democrats urged a "minimum standard" for adults.
Health Minister Edwina Hart said she was concerned by the length of time some patients were waiting.
She said a review currently underway might recommend standards for the service across Wales.
Conservative social justice spokesman Mark Isherwood said that "unacceptable delays are leaving disabled and vulnerable people in pain and without the equipment they need to improve their quality of life".
"The health minister herself is on record as saying 'equality of access to all services is key' - we share that sentiment," he said.
"We share the concerns of Disabled Children Matter about the impact of these delays on the well-being of disabled children in Wales.
"Equality means disabled children having the same opportunities as non-disabled children in their daily lives," Mr Isherwood added.
Lib Dems called for a "minimum standard" for adult wheelchair provision, ensuring that no-one would have to wait longer than a year for a wheelchair.
'No recognised standards'
In a statement Ms Hart said: "I am concerned about the length of time some patients are waiting for their assessments and receiving their wheelchairs.
"The provision of wheelchair services falls primarily to the Artificial Limb and Appliance Service (ALAS), which is not an all-Wales service but is based around two centres in Cardiff and Wrexham.
"There are no recognised standards for wheelchair services for adults in Wales, however a review into the provision of wheelchairs and specialist seating is currently under way in Wales, where a possible recommendation may be the establishment of standards for the service across Wales.
"Senior Welsh Assembly Government officials are working with health professionals and other key stakeholders and service users to review the current provision, identify any gaps and consider how it can be improved."
Ms Hart said she would be receiving the report from the review this month.
Last March, long waits for specialist wheelchairs were criticised as "disgusting" by patients and parents in north Wales.
A total of 53 adults and children were waiting for an assessment to allow them to receive wheelchairs.
One child had been waiting for 20 months and the North Wales NHS Trust said it had cut times and was aiming to ensure no child waited more than a year.
Wheelchair user's plinth 'stand'
Mrs Pedler said she wanted to raise awareness of disabled access
An 84-year-old woman in a mobility scooter has taken up temporary residence on Trafalgar Square's Fourth Plinth to help promote disabled access.
Gwynneth Pedler, from Cumnor, in Oxfordshire, was the oldest volunteer to be chosen for Anthony Gormley's 100-day-long living art project in London.
She began her one-hour stint at 0300 BST and waved semaphore flags telling people to live their lives to the full.
She is now planning to go paragliding for her 85th birthday on 23 July, 2010.
Mrs Pedler said Monday's experience was "absolutely brilliant," in spite of the rain.
'Semaphore training'
She said her flags got very wet and "kept flopping in my face" but she stayed focused on getting across the positive message that she wanted to, from 25ft (7.62m) high up on the plinth.
Mrs Pedler is a former Oxfordshire school teacher and said she learnt semaphore as a girl when she was a sea ranger.
As a result of her plinth exhibit she said: "The cause of disability and access will be in some people's minds who haven't had it in their minds before."
Shortly after being lowered down, she announced her intention to spend her 85th birthday paragliding.
"I've been up the rigging in a tall ship in my chair, I've been up the plinth in my scooter, next year I am going to go paragliding in some form of transport," she said.
An 84-year-old woman in a mobility scooter has taken up temporary residence on Trafalgar Square's Fourth Plinth to help promote disabled access.
Gwynneth Pedler, from Cumnor, in Oxfordshire, was the oldest volunteer to be chosen for Anthony Gormley's 100-day-long living art project in London.
She began her one-hour stint at 0300 BST and waved semaphore flags telling people to live their lives to the full.
She is now planning to go paragliding for her 85th birthday on 23 July, 2010.
Mrs Pedler said Monday's experience was "absolutely brilliant," in spite of the rain.
'Semaphore training'
She said her flags got very wet and "kept flopping in my face" but she stayed focused on getting across the positive message that she wanted to, from 25ft (7.62m) high up on the plinth.
Mrs Pedler is a former Oxfordshire school teacher and said she learnt semaphore as a girl when she was a sea ranger.
As a result of her plinth exhibit she said: "The cause of disability and access will be in some people's minds who haven't had it in their minds before."
Shortly after being lowered down, she announced her intention to spend her 85th birthday paragliding.
"I've been up the rigging in a tall ship in my chair, I've been up the plinth in my scooter, next year I am going to go paragliding in some form of transport," she said.
Tom’s standing ovation for his video
A TEENAGE cerebral palsy sufferer has received a standing ovation after unveiling a self-produced video documenting his own life-threatening spinal surgery.
Tom Williams pitched Rebuilding Thomas to medical experts at the Custard Factory, in Birmingham, on Friday.
The 18-year-old sold 80 copies to a metal spine manufacturer and hopes to hear back from NHS trusts and charities in the coming weeks.
Tom (pictured) said he would now take a well-earned rest after a “whirlwind” week, during which he also discovered he had passed his A-levels.
The Newborough resident said: “It’s been a crazy week but I’m absolutely delighted to have got into Bradford University, where I’ll study to be a film producer, and to have got a standing ovation on Friday.
“I managed to change the views of those who thought the documentary would be too depressing and hope it goes on to be a success.
“I’m now going to take a year out to go to independence college, then on to uni, but I’ll always reflect on this and feel proud of what I’ve achieved.” Tom underwent a 12-hour operation to straighten his spine last year, filming his experiences before, during and after surgery.
He funded the film’s production with his disability benefits and now hopes NHS trusts around the UK will buy it to help parents, patients and doctors cope with similar operations.
During his year out, Tom will take up a new role as national advisor for the Scoliosis Society.
23 August 2009
Innovative wheelchair could aid disabled
Video
See the Smartchair in action. The multifunction wheelchair.
By Tim Booler
Chief reporter
A Wearside innovation could revolutionise the lives of disabled people around the world.
The humble wheelchair is about to benefit from new technology and the skills of Sunderland entrepreneurs and North East inventors.
They have devised the Smartchair, which they believe could transform the way disabled people can be transported in hospitals, care homes and even their own houses.
It works as a multi-function platform and can change from a wheelchair to a stretcher or lifting platform, without affecting stability.
The inventors say the Smartchair cuts the need for many different items for individual functions, and makes the moving process more dignified for patients.
A company, Smartchair Ltd, was set up to develop the idea through Boldon firm Em8 Technology.
The group behind the scheme includes Sunderland entrepreneur Alex Bastholm; city businessmen Neil Herron, 46, and Matthew Thoburn, 44; inventor and former Sunderland University lecturer Dr Phillip Tann; inventor Andrew Turner, from County Durham; and company directors Paul Wright and Byron Longstaff.
The Smartchair has been pitched to American experts in the field and UK hospitals as well as Sunningdale School and Ingleside Residential Home.
"Everbody who's seen the demo video has loved it," said Mr Herron, Smartchair director. "It will allow people more mobility and freedom, and make life easier for hospital staff and carers."
The idea started eight years ago when Mr Bastholm – the developer behind Dalton Park Shopping Mall – required a mobility device for his stepdad, who suffered from multiple sclerosis.
Finding nothing suitable on the market, he turned to inventor and robotics expert Andrew Turner, from the automotive industry, who came up with the innovative Smartchair design.
"We had to think outside of the box," said Mr Bastholm. "It's a massive idea. And it's a necessity not a luxury."
The company now aims to take the idea to the next step.
"We have already demonstrated the design and concept to the Georgia Institute of Technology University Hospital," said Mr Herron.
"They have indicated an early interest in the technology and they require a working prototype to proceed further.
"In association with Georgia Tech we presented the technology to the Shepherd Group, who famously helped design the wheelchair system used by Superman actor Christopher Reeve.
"We are keen to develop and manufacture in the North East and bring manufacturing jobs to the area and we are considering funding options from a number of agencies.
"We have already been supported by funding from Business Link and the Regional Technology Council and we are currently discussing the way forward with One Northeast.
"Given the interest we have had already from the States and the NHS we are confident that we will have a product ready for manufacture within 12 months."
Fellow director and investor Mr Thoburn said: "We are keen to push forward and showcase Sunderland-developed and manufactured technology on the national and world stage."
See the Smartchair in action. The multifunction wheelchair.
By Tim Booler
Chief reporter
A Wearside innovation could revolutionise the lives of disabled people around the world.
The humble wheelchair is about to benefit from new technology and the skills of Sunderland entrepreneurs and North East inventors.
They have devised the Smartchair, which they believe could transform the way disabled people can be transported in hospitals, care homes and even their own houses.
It works as a multi-function platform and can change from a wheelchair to a stretcher or lifting platform, without affecting stability.
The inventors say the Smartchair cuts the need for many different items for individual functions, and makes the moving process more dignified for patients.
A company, Smartchair Ltd, was set up to develop the idea through Boldon firm Em8 Technology.
The group behind the scheme includes Sunderland entrepreneur Alex Bastholm; city businessmen Neil Herron, 46, and Matthew Thoburn, 44; inventor and former Sunderland University lecturer Dr Phillip Tann; inventor Andrew Turner, from County Durham; and company directors Paul Wright and Byron Longstaff.
The Smartchair has been pitched to American experts in the field and UK hospitals as well as Sunningdale School and Ingleside Residential Home.
"Everbody who's seen the demo video has loved it," said Mr Herron, Smartchair director. "It will allow people more mobility and freedom, and make life easier for hospital staff and carers."
The idea started eight years ago when Mr Bastholm – the developer behind Dalton Park Shopping Mall – required a mobility device for his stepdad, who suffered from multiple sclerosis.
Finding nothing suitable on the market, he turned to inventor and robotics expert Andrew Turner, from the automotive industry, who came up with the innovative Smartchair design.
"We had to think outside of the box," said Mr Bastholm. "It's a massive idea. And it's a necessity not a luxury."
The company now aims to take the idea to the next step.
"We have already demonstrated the design and concept to the Georgia Institute of Technology University Hospital," said Mr Herron.
"They have indicated an early interest in the technology and they require a working prototype to proceed further.
"In association with Georgia Tech we presented the technology to the Shepherd Group, who famously helped design the wheelchair system used by Superman actor Christopher Reeve.
"We are keen to develop and manufacture in the North East and bring manufacturing jobs to the area and we are considering funding options from a number of agencies.
"We have already been supported by funding from Business Link and the Regional Technology Council and we are currently discussing the way forward with One Northeast.
"Given the interest we have had already from the States and the NHS we are confident that we will have a product ready for manufacture within 12 months."
Fellow director and investor Mr Thoburn said: "We are keen to push forward and showcase Sunderland-developed and manufactured technology on the national and world stage."
Anat Baniel Method(R) Transforms the Lives of Children with Special Needs
Anat Baniel Method(R) Transforms the Lives of Children with Special Needs - Anat Baniel to Lead One-day Workshop for Parents and Practitioners
Parents of and professionals working with children with special needs are invited to attend a one day intensive workshop led by Anat Baniel, founder of the Anat Baniel Method and learn cutting edge, scientifically based techniques that rewire the child's brain to attain remarkable outcomes. http://www.youtube.com/user/abmethod
San Rafael, CA (PRWEB) August 14, 2009 -- Parents of and professionals working with children with special needs are invited to attend a one day intensive workshop led by Anat Baniel, founder of the Anat Baniel Method and learn cutting edge, scientifically based techniques that rewire the child's brain to attain remarkable outcomes.
The Anat Baniel Method offers an amazing utilization of brain plasticity principles for the transformation of children with special needs.
"Baniel has developed powerful, practical strategies for improving your abilities and building a better, stronger brain that are supported by the neuroscience of brain plasticity." -- Michael M. Merzenich, Ph.D
Children with special needs are often given a bleak prognosis. The parents are told to keep their hopes down, to be "realistic" about what is possible for their special needs child. http://www.anatbanielmethod.com/help-children-overview.htm
With the Anat Baniel Method, children born with special needs overcome limitations and achieve successful functioning beyond common medical prognosis in ways that are often described as miraculous. http://www.anatbanielmethod.com/parents-success-stories.htm
The ABM is gentle, utilizing innovative movements, awareness and the conditions the brain requires to help the brain of a special needs child form new neural connections and patterns that take the child beyond their current limitations. http://anatbanielmethod.com/move-into-life-the-book.html The professional and parent will acquire practical tools and an understanding of how to help the child develop a better and stronger brain that can create remarkable new possibilities for the child.
"I feel that Anat Baniel's work deserves to have the greatest possible audience, both in the rehabilitation medicine community and beyond." -- Dr. Daniel Graupe, University of Illinois, Chicago
The workshop is experiential and the participants will experience the power of their own bodies, brains, and minds to change powerfully. Meet and work with Anat Baniel in person at a one day workshop for parents and caregivers of and professionals working with children with special needs. This workshop will also be streamed live over the Internet.
DATE: August 29, 2009 - 9:30AM to 4:30PM
LOCATION: UC Santa Barbara, Corwin Pavilion
IN-PERSON: Early bird $99; after Aug. 15 $165; $199 at the door
STREAMING: Early bird $39; $49 day of the event
REGISTER: http://anatbanielmethod.com/workshops-public.htm#children
CONTACT: Claire Lanyado: 415.472-6622
Kris Costello: 805.717-0795
Practitioners using the Anat Baniel Method have facilitated breakthroughs with Learning Disabilities, Attention Deficit Disorder (ADD) & Attention Deficit Hyperactivity Disorder (ADHA). With the Anat Baniel Method many children diagnosed with Child Autism, Sensory Integration Disorder and Pervasive Developmental Disorders improve in remarkable ways, well beyond what they accomplished prior to working with ABM. When work begins with the child prior to age two and even three, often the child will stop demonstrating the initial symptoms and "lose" their initial diagnosis and older children's lives become fuller and freer. ABM has been successful in the treatment for Cerebral Palsy, Brain Damaged Infants and the Brain Injured Child, as well as with Brachial Plexus Injury, Infant Torticollis and other birth injuries and defects with new information necessary for it to form new neural connections and patterns. With the Anat Baniel Method (ABM) children diagnosed with Human Genetic Disorders like Fragile X Syndrome, Spinal Muscular Dystrophy, Down's Syndrome, Charcot-Marie-Tooth disease, or Chromosomal Disorders have improved in remarkable ways, in both physical and cognitive functioning. The Anat Baniel method for children offers a highly effective method for the child born with scoliosis, as well. http://www.anatbanielmethod.com
For more information, or to purchase DVD and CD programs of the Anat Baniel Method, please visit http://anatbanielmethod.com.
# # #
Contact Information
Claire Lanyado
Anat Baniel Method
http://www.anatbanielmethod.com
415.472-6622
Parents of and professionals working with children with special needs are invited to attend a one day intensive workshop led by Anat Baniel, founder of the Anat Baniel Method and learn cutting edge, scientifically based techniques that rewire the child's brain to attain remarkable outcomes. http://www.youtube.com/user/abmethod
San Rafael, CA (PRWEB) August 14, 2009 -- Parents of and professionals working with children with special needs are invited to attend a one day intensive workshop led by Anat Baniel, founder of the Anat Baniel Method and learn cutting edge, scientifically based techniques that rewire the child's brain to attain remarkable outcomes.
The Anat Baniel Method offers an amazing utilization of brain plasticity principles for the transformation of children with special needs.
"Baniel has developed powerful, practical strategies for improving your abilities and building a better, stronger brain that are supported by the neuroscience of brain plasticity." -- Michael M. Merzenich, Ph.D
Children with special needs are often given a bleak prognosis. The parents are told to keep their hopes down, to be "realistic" about what is possible for their special needs child. http://www.anatbanielmethod.com/help-children-overview.htm
With the Anat Baniel Method, children born with special needs overcome limitations and achieve successful functioning beyond common medical prognosis in ways that are often described as miraculous. http://www.anatbanielmethod.com/parents-success-stories.htm
The ABM is gentle, utilizing innovative movements, awareness and the conditions the brain requires to help the brain of a special needs child form new neural connections and patterns that take the child beyond their current limitations. http://anatbanielmethod.com/move-into-life-the-book.html The professional and parent will acquire practical tools and an understanding of how to help the child develop a better and stronger brain that can create remarkable new possibilities for the child.
"I feel that Anat Baniel's work deserves to have the greatest possible audience, both in the rehabilitation medicine community and beyond." -- Dr. Daniel Graupe, University of Illinois, Chicago
The workshop is experiential and the participants will experience the power of their own bodies, brains, and minds to change powerfully. Meet and work with Anat Baniel in person at a one day workshop for parents and caregivers of and professionals working with children with special needs. This workshop will also be streamed live over the Internet.
DATE: August 29, 2009 - 9:30AM to 4:30PM
LOCATION: UC Santa Barbara, Corwin Pavilion
IN-PERSON: Early bird $99; after Aug. 15 $165; $199 at the door
STREAMING: Early bird $39; $49 day of the event
REGISTER: http://anatbanielmethod.com/workshops-public.htm#children
CONTACT: Claire Lanyado: 415.472-6622
Kris Costello: 805.717-0795
Practitioners using the Anat Baniel Method have facilitated breakthroughs with Learning Disabilities, Attention Deficit Disorder (ADD) & Attention Deficit Hyperactivity Disorder (ADHA). With the Anat Baniel Method many children diagnosed with Child Autism, Sensory Integration Disorder and Pervasive Developmental Disorders improve in remarkable ways, well beyond what they accomplished prior to working with ABM. When work begins with the child prior to age two and even three, often the child will stop demonstrating the initial symptoms and "lose" their initial diagnosis and older children's lives become fuller and freer. ABM has been successful in the treatment for Cerebral Palsy, Brain Damaged Infants and the Brain Injured Child, as well as with Brachial Plexus Injury, Infant Torticollis and other birth injuries and defects with new information necessary for it to form new neural connections and patterns. With the Anat Baniel Method (ABM) children diagnosed with Human Genetic Disorders like Fragile X Syndrome, Spinal Muscular Dystrophy, Down's Syndrome, Charcot-Marie-Tooth disease, or Chromosomal Disorders have improved in remarkable ways, in both physical and cognitive functioning. The Anat Baniel method for children offers a highly effective method for the child born with scoliosis, as well. http://www.anatbanielmethod.com
For more information, or to purchase DVD and CD programs of the Anat Baniel Method, please visit http://anatbanielmethod.com.
# # #
Contact Information
Claire Lanyado
Anat Baniel Method
http://www.anatbanielmethod.com
415.472-6622
Pendulum heart cured by spine op
Koryn now stands two inches taller
A teenage girl whose heart was pushed to the wrong side of her body by a rare spine deformity has been cured by surgery.
Koryn McFadden, an 18-year-old nursery nurse from Corby, Northants, had scoliosis, a curvature of the spine.
The defect produced a pendulum effect where her heart was pushed three inches to the right.
Surgeons at the Queen's Medical Centre in Nottingham say her heart should now stay in place following her operation.
Doctors discovered the problem in 2006 after Koryn had been in a car crash and damaged the vertebrae of her spine.
An x-ray showed up the curvature, which doctors said had been getting progressively worse for years.
Koryn said: "I feel like the car accident was fate - it was the only reason I found out about the scoliosis.
"I've always been fit and healthy so I was shocked when I saw the X-ray of my spine. At first I told the nurse she must have the X-rays mixed up."
Koryn's x-rays before (right) and after (left) the surgery
Although initially the scoliosis caused her no symptoms, with time it gave her daily pain and doctors were worried the curve was putting too much strain on her heart.
Koryn said: "I couldn't get out of bed and kept having to call in sick to work."
Last month Koryn had an eight-hour operation where surgeons inserted two 16 inch-long titanium rods and 10 metal pins into her spine.
Now Koryn stands straight and two inches taller and her heart is back in the right place.
Koryn said: "I feel about 10ft tall and my friends all love my new posture.
"I was absolutely petrified about having to go in for such a major operation, but it has been so worth it."
A spokeswoman for the Scoliosis Association said: "If scoliosis goes untreated, it will cause massive effects on heart function and reduce breathing capacity because the lungs are getting smaller."
A teenage girl whose heart was pushed to the wrong side of her body by a rare spine deformity has been cured by surgery.
Koryn McFadden, an 18-year-old nursery nurse from Corby, Northants, had scoliosis, a curvature of the spine.
The defect produced a pendulum effect where her heart was pushed three inches to the right.
Surgeons at the Queen's Medical Centre in Nottingham say her heart should now stay in place following her operation.
Doctors discovered the problem in 2006 after Koryn had been in a car crash and damaged the vertebrae of her spine.
An x-ray showed up the curvature, which doctors said had been getting progressively worse for years.
Koryn said: "I feel like the car accident was fate - it was the only reason I found out about the scoliosis.
"I've always been fit and healthy so I was shocked when I saw the X-ray of my spine. At first I told the nurse she must have the X-rays mixed up."
Koryn's x-rays before (right) and after (left) the surgery
Although initially the scoliosis caused her no symptoms, with time it gave her daily pain and doctors were worried the curve was putting too much strain on her heart.
Koryn said: "I couldn't get out of bed and kept having to call in sick to work."
Last month Koryn had an eight-hour operation where surgeons inserted two 16 inch-long titanium rods and 10 metal pins into her spine.
Now Koryn stands straight and two inches taller and her heart is back in the right place.
Koryn said: "I feel about 10ft tall and my friends all love my new posture.
"I was absolutely petrified about having to go in for such a major operation, but it has been so worth it."
A spokeswoman for the Scoliosis Association said: "If scoliosis goes untreated, it will cause massive effects on heart function and reduce breathing capacity because the lungs are getting smaller."
Madonna Daughter Lourdes Back Brace For Scoliosis
Lourdes Ciccone Leon, the 12-year-old daughter of pop queen Madonna, has been ordered to wear a back brace to help correct a spinal problem.
Lourdes was photographed earlier this month wearing SpineCor body brace around her waist.
Spinal expert Dr. Ron Marinaro, of The Scoliosis Center of Los Angeles, explains that the discreet device is designed for patients diagnosed with idiopathic scoliosis, a common spine curvature that affects more than 3 million youngsters.
Dr. Marinaro tells Star, “She’ll probably only have to wear if for about a year or two.”
Lourdes — who was also fitted with dental braces earlier this summer — will still be able to dance and engage in other physical activity as she’s being treated.
(Glad to hear Mini Madge is going to be okay.)
Welsh scientists make epilepsy research breakthrough
ONE of Rome’s greatest warriors, Julius Caesar, suffered from it, as did French Emperor Napoleon and Greek philosopher Socrates.
Now, research by Welsh scientists could lead to radical new treatments for epilepsy.
Half of all cases of the condition are linked to an obvious cause such as a head injury, brain tumour or another neurological disease.
In almost all other cases the condition is believed to have a genetic basis – but so far little progress has been made in identifying the genes responsible.
However, the latest study by the researchers from Swansea University, working with counterparts from the University of Leeds – published this week in the journal PNAS (Proceedings of the National Academy of Sciences) – shows that a mutation in a gene called ATP1A3 can lead to a severe form of epilepsy in mice.
If the findings translate to human beings, they could pave the way for more effective treatments that could in the future make inherited epilepsy a thing of the past.
The study has shown that inherited epilepsy can be halted by silencing the gene responsible for its development.
Professor Mark Rees, leader of the Swansea University arm of the joint research project, said clinical trials are to start soon.
He said: “This study has a great deal of potential for the development of specifically tailored drugs to treat epilepsy. Dr Steve Clapcote (leader of the Leeds University researchers) and I have been working together for some time screening an archive of DNA samples from epileptic patients and we are now applying for grant funding to move forward into clinical trials.
“I am very much looking forward to the results of these trials as results to date are very promising indeed.”
The scientists studied a strain of mouse called Myshkin, which has an inherited form of severe epilepsy.
The mice were found to have a defective version of the gene ATP1A3 which led them to suffer spontaneous seizures.
Researchers managed to breed the defect out of epileptic mice by balancing “good” and “bad” genes – the researchers found genes without the defective version of ATP1A3 cancelled out genes with it during breeding.
Dr Clapcote said: “Our study has identified a new way in which epilepsy can be caused and prevented in mice, and therefore it may provide clues to potential causes, therapies and preventative measures in human epilepsy.”
The human equivalent of the mouse gene matched it by more than 99%, he added.
Simon Wigglesworth, deputy chief executive of the charity Epilepsy Action, welcomed the research yesterday, saying: “This is encouraging news, although it is too early to say whether this treatment will work for humans.
“At the moment there is no treatment to cure epilepsy, other than surgery, which is only effective for small numbers.”
Epilepsy is currently defined as a tendency to have recurrent seizures (sometimes called fits).
A seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal messages passing between brain cells.
This disruption results in the brain’s messages becoming halted or mixed up.
The ancient approach to epilepsy was that it was caused by demons and could be cured by magic or prayers.
Early sufferers such as Julius Caesar, who had a family history of seizures, did their best to hide the affliction as it was seen as a damaging weakness.
Hippocrates was one of the first physicians to recognise it as a physical ailment.
Famous people with epilepsy include:
Kyffin Williams, the Welsh landscape painter, had to end his army career due to epilepsy.
Vladimir Lenin, First Premier of the Soviet Union. His final year was characterised by neurological decline and in his last few months, he developed epilepsy. His seizures worsened and he died in status epilepticus, which had lasted 50 minutes.
Canadian singer songwriter Neil Young, 63, disliked the effects of his medication for the condition and sought “personal stability” as an alternative means of control.
Mike Skinner, 31, frontman of The Streets, had epilepsy between the ages of seven and 20.
Former cricket star Tony Greig, who is involved with Epilepsy Action Australia, had his first seizure aged 14, during a tennis game, but has successfully controlled his epilepsy with medication.
Boxer Terry Marsh, 51,was IBF world light-welterweight champion but his diagnosis of epilepsy in 1987, aged 29, forced him into retirement undefeated.
Max Clifford, 66, the publicist, developed epilepsy at the age of 46.
Laurie Lee, the writer most famous for his autobiographical trilogy, which includes Cider with Rosie, developed epilepsy after he was knocked down by a bicycle at the age of 10. He kept it secret and it only surfaced when his papers were read by biographers after his death.
Now, research by Welsh scientists could lead to radical new treatments for epilepsy.
Half of all cases of the condition are linked to an obvious cause such as a head injury, brain tumour or another neurological disease.
In almost all other cases the condition is believed to have a genetic basis – but so far little progress has been made in identifying the genes responsible.
However, the latest study by the researchers from Swansea University, working with counterparts from the University of Leeds – published this week in the journal PNAS (Proceedings of the National Academy of Sciences) – shows that a mutation in a gene called ATP1A3 can lead to a severe form of epilepsy in mice.
If the findings translate to human beings, they could pave the way for more effective treatments that could in the future make inherited epilepsy a thing of the past.
The study has shown that inherited epilepsy can be halted by silencing the gene responsible for its development.
Professor Mark Rees, leader of the Swansea University arm of the joint research project, said clinical trials are to start soon.
He said: “This study has a great deal of potential for the development of specifically tailored drugs to treat epilepsy. Dr Steve Clapcote (leader of the Leeds University researchers) and I have been working together for some time screening an archive of DNA samples from epileptic patients and we are now applying for grant funding to move forward into clinical trials.
“I am very much looking forward to the results of these trials as results to date are very promising indeed.”
The scientists studied a strain of mouse called Myshkin, which has an inherited form of severe epilepsy.
The mice were found to have a defective version of the gene ATP1A3 which led them to suffer spontaneous seizures.
Researchers managed to breed the defect out of epileptic mice by balancing “good” and “bad” genes – the researchers found genes without the defective version of ATP1A3 cancelled out genes with it during breeding.
Dr Clapcote said: “Our study has identified a new way in which epilepsy can be caused and prevented in mice, and therefore it may provide clues to potential causes, therapies and preventative measures in human epilepsy.”
The human equivalent of the mouse gene matched it by more than 99%, he added.
Simon Wigglesworth, deputy chief executive of the charity Epilepsy Action, welcomed the research yesterday, saying: “This is encouraging news, although it is too early to say whether this treatment will work for humans.
“At the moment there is no treatment to cure epilepsy, other than surgery, which is only effective for small numbers.”
Epilepsy is currently defined as a tendency to have recurrent seizures (sometimes called fits).
A seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal messages passing between brain cells.
This disruption results in the brain’s messages becoming halted or mixed up.
The ancient approach to epilepsy was that it was caused by demons and could be cured by magic or prayers.
Early sufferers such as Julius Caesar, who had a family history of seizures, did their best to hide the affliction as it was seen as a damaging weakness.
Hippocrates was one of the first physicians to recognise it as a physical ailment.
Famous people with epilepsy include:
Kyffin Williams, the Welsh landscape painter, had to end his army career due to epilepsy.
Vladimir Lenin, First Premier of the Soviet Union. His final year was characterised by neurological decline and in his last few months, he developed epilepsy. His seizures worsened and he died in status epilepticus, which had lasted 50 minutes.
Canadian singer songwriter Neil Young, 63, disliked the effects of his medication for the condition and sought “personal stability” as an alternative means of control.
Mike Skinner, 31, frontman of The Streets, had epilepsy between the ages of seven and 20.
Former cricket star Tony Greig, who is involved with Epilepsy Action Australia, had his first seizure aged 14, during a tennis game, but has successfully controlled his epilepsy with medication.
Boxer Terry Marsh, 51,was IBF world light-welterweight champion but his diagnosis of epilepsy in 1987, aged 29, forced him into retirement undefeated.
Max Clifford, 66, the publicist, developed epilepsy at the age of 46.
Laurie Lee, the writer most famous for his autobiographical trilogy, which includes Cider with Rosie, developed epilepsy after he was knocked down by a bicycle at the age of 10. He kept it secret and it only surfaced when his papers were read by biographers after his death.
Area child battling cerebral palsy
MARTINSBURG - Two years ago, the Kee family had never heard of a little town in Mexico called Nuevo Progresso, so obviously they didn't know what a great role it would play in their lives.
Brodie Kee, 20 months old, made his trip to Nuevo Progresso when he was only 14 months old. This wasn't a vacation to see the sights of Mexico, but a visit to a clinic called the International Stem Cell Institute.
"I had the perfect pregnancy. Nothing was wrong," said 20-year-old Kayla Kee, Brodie's mother. But two weeks before her due date, she became very ill and started having severe contractions. She noticed Brodie hadn't been moving as much as usual. The pain was so severe she decided to go to the emergency room, and after a through examination, her doctors at Ruby Memorial Hospital in Morgantown decided she needed an emergency Caesarean section because the baby's heart rate was extremely slow.
When he was born, Brodie wasn't breathing. Brodie's father, 22-year-old Adam Kee, said it took eight minutes to revive him. The doctor's recommended Brodie be immediately flown to Georgetown University Hospital in Washington, D.C., for a treatment called "total body cooling."
According to the Eunice Kennedy Shriver National Institute of Child Health and Human Development, body cooling is a procedure used to protect against brain injury in full-term infants born with birth asphyxia. The hope of body cooling is that it will increase the infant's chances for survival and possibly decrease the severity of neurological disability.
"The nurse at Georgetown told us Brodie had about a 10 percent chance of survival," said Rick Kee, Brodie's grandfather. They honestly didn't think he was going to make it.
For three days, Brodie was intubated and kept on a cooling blanket.
"He didn't move. He didn't cry. He didn't do anything," said Diane Kee, Brodie's grandmother.
After two weeks at Georgetown, Brodie was flown back to Ruby Memorial Hospital so he could be closer to home, where his parents are students at West Virginia University.
When Brodie returned to Ruby Memorial Hospital, Adam Kee said the medical staff painted a very grim picture for them.
"They gave him a 40 percent chance of living," he said. They were told that even if Brodie did survive, he may be blind and/or deaf, or never walk, talk or eat on his own."
To this day the Kees have no idea what happened to their baby - what made him so sick. They do know that whatever caused his asphyxia at birth now has caused him to have cerebral palsy.
The National Institute of Neurological Disorders and Stroke defines cerebral palsy as being "any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don't worsen over time. ... It is caused by abnormalities in parts of the brain that control muscle movements. The most common (signs) are a lack of muscle coordination when performing voluntary movements; ... stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a 'scissored' gait and muscle tone that is either too stiff or too floppy."
Brodie has the spasticity form of cerebral palsy, and before his trip to Mexico, he was very stiff and rigid.
What happened in Mexico? A miracle some might say.
Diane and Rick Kee are both nurses in the Martinsburg area, and during a seminar they attended in Morgantown for continuing education, they were introduced to stem cell research and what is being done to help diabetic patients.
Wondering what stem cell treatment might do for Brodie, the Kees started researching stem cell therapy and cerebral palsy.
"When we got home, we started searching on the Internet," Diane Kee said. "We saw they were doing stem cell treatment at Duke University and in Georgia, but you had to have the baby's cord blood and we didn't."
Kayla and Adam Kee said they had heard about saving their baby's cord blood after birth, but like most young parents, they didn't have the $2,000 needed to pay for it and actually never thought they would need it.
One day, feeling like they had exhausted all of their options, Diane Kee said she came across the Web site for the International Stem Cell Institute located in Nuevo Progresso, Mexico.
"A whole new world opened up to us," she said.
She read what the Web site had to say, then after speaking with the parent of a child in Florida who had the procedure, the Kees felt it was worth a try for Brodie.
"I was very skeptical," said Kayla Kee. "I thought, 'Oh my gosh - am I really about to do this?'"
Being very apprehensive, the Kees took a leap of faith and left for Nuevo Progresso with $10,000 to pay for Brodie's placental stem cell therapy treatment.
Nuevo Progress is located just across the southern tip of Texas in Mexico. The Kees actually stayed at a hotel in McAllen, Texas.
The Kees admit it was a little scary. There they were, going into a foreign country that has a violent reputation, while carrying a cashier's check.
They found that the International Stem Cell Institute is a very small operation made up of one doctor, a nurse and an office manager. Again, not very reassuring.
But once they met Rita Alexander, the office manager, and Dr. Gonzalez, they knew Brodie was in good hands.
"He was very sweet. Before the procedure, he made sure we didn't have any other questions," said Kayla. "You could see in his eyes that he really cared."
Although some of the equipment looked a little dated, the Kees said the office was very clean and the staff was very friendly.
Adam said Alexander told them that the worst that could happen was that nothing would happen, but the best that could happen was that they would see some sort of improvement in Brodie - and they have.
The entire procedure took only about a half-hour to complete. Brodie had four 1/4-inch incisions made - one in each arm and leg and one in his stomach. In the incision, Gonzalez placed placental and umbilical cord tissue containing stem cells. He then closed the incisions and the procedure was over. He used a local anesthetic for each incision and Brodie was awake the entire time, smiling and happy, his parents said.
Before the treatment, Brodie was not able to lie on his stomach. Adam Kee said his muscles would become very tense and he would arch his back, bowed up like a banana.
"I could tell he was in pain," said Kayla Kee. But ever since the treatment, Brodie has not had one episode of back arching and can even lie on his stomach now.
The Kees said they started noticing improvements in about two weeks.
"It was almost overnight," Adam Kee said.
Brodie had the procedure done last St. Patrick's Day, and his parents said he is a completely different child now.
Before Brodie had the stem cells placed into his stomach, he used to projectile vomit and couldn't keep any food down.
But now, his mother said he's eating well and has put on weight.
The Kees said they want to emphasize that the stem cells used for Brodie's treatment came from placental and umbilical cord tissue, not embryonic stem cells.
Diane Kee said the tissue used in the procedure goes through extensive testing, and because it does not have a blood type, stem cell treatment is not like an organ transplant - it is universal.
The Kees said that stem cell treatment is something that can be multiple times, depending on the illness being treated. For example, if someone has a degenerative disease, like rheumatoid arthritis, the patient must go back for follow-up treatments in order to maintain a certain level of health. If the disease is non-degenerative, like cerebral palsy, the patient can keep going back for treatment and hopefully continue getting positive results until the patient has reached full potential.
The Kees plan on returning to either Mexico or possibly Germany to continue Brodie's treatment.
Unfortunately the stem cell treatment and the trips involved are very expensive, and for two college students, it's more than just a financial stretch. That is why the Kees are planning several fundraising events in the future.
On Oct. 23, the Civitan Club is hosting a basket bingo at the Moose Lodge in Martinsburg. Diane Kee said she has a lot of Longaberger baskets she is donating to the cause.
Adam Kee said he went to high school with Nate Sowers, quarterback for the West Virginia Mountaineers, and he has given him three footballs to be signed by Noel Devine and other players on the team, that he will then raffle off.
The Kees hope the community fundraising efforts will help them pay for Brodie's treatment and travel costs.
When it comes to stem cell research, "new things are happening every day," said Diane Kee.
Even though patients might have to go out of the country at this point to seek treatment, the Kees want the community to know there are options out there for people struggling with a variety of diseases.
"I don't want people to hesitate because they're scared," said Kayla Kee.
As Diane Kee said, "We took a leap of faith," and it has certainly paid off.
Brodie Kee, 20 months old, made his trip to Nuevo Progresso when he was only 14 months old. This wasn't a vacation to see the sights of Mexico, but a visit to a clinic called the International Stem Cell Institute.
"I had the perfect pregnancy. Nothing was wrong," said 20-year-old Kayla Kee, Brodie's mother. But two weeks before her due date, she became very ill and started having severe contractions. She noticed Brodie hadn't been moving as much as usual. The pain was so severe she decided to go to the emergency room, and after a through examination, her doctors at Ruby Memorial Hospital in Morgantown decided she needed an emergency Caesarean section because the baby's heart rate was extremely slow.
When he was born, Brodie wasn't breathing. Brodie's father, 22-year-old Adam Kee, said it took eight minutes to revive him. The doctor's recommended Brodie be immediately flown to Georgetown University Hospital in Washington, D.C., for a treatment called "total body cooling."
According to the Eunice Kennedy Shriver National Institute of Child Health and Human Development, body cooling is a procedure used to protect against brain injury in full-term infants born with birth asphyxia. The hope of body cooling is that it will increase the infant's chances for survival and possibly decrease the severity of neurological disability.
"The nurse at Georgetown told us Brodie had about a 10 percent chance of survival," said Rick Kee, Brodie's grandfather. They honestly didn't think he was going to make it.
For three days, Brodie was intubated and kept on a cooling blanket.
"He didn't move. He didn't cry. He didn't do anything," said Diane Kee, Brodie's grandmother.
After two weeks at Georgetown, Brodie was flown back to Ruby Memorial Hospital so he could be closer to home, where his parents are students at West Virginia University.
When Brodie returned to Ruby Memorial Hospital, Adam Kee said the medical staff painted a very grim picture for them.
"They gave him a 40 percent chance of living," he said. They were told that even if Brodie did survive, he may be blind and/or deaf, or never walk, talk or eat on his own."
To this day the Kees have no idea what happened to their baby - what made him so sick. They do know that whatever caused his asphyxia at birth now has caused him to have cerebral palsy.
The National Institute of Neurological Disorders and Stroke defines cerebral palsy as being "any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don't worsen over time. ... It is caused by abnormalities in parts of the brain that control muscle movements. The most common (signs) are a lack of muscle coordination when performing voluntary movements; ... stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a 'scissored' gait and muscle tone that is either too stiff or too floppy."
Brodie has the spasticity form of cerebral palsy, and before his trip to Mexico, he was very stiff and rigid.
What happened in Mexico? A miracle some might say.
Diane and Rick Kee are both nurses in the Martinsburg area, and during a seminar they attended in Morgantown for continuing education, they were introduced to stem cell research and what is being done to help diabetic patients.
Wondering what stem cell treatment might do for Brodie, the Kees started researching stem cell therapy and cerebral palsy.
"When we got home, we started searching on the Internet," Diane Kee said. "We saw they were doing stem cell treatment at Duke University and in Georgia, but you had to have the baby's cord blood and we didn't."
Kayla and Adam Kee said they had heard about saving their baby's cord blood after birth, but like most young parents, they didn't have the $2,000 needed to pay for it and actually never thought they would need it.
One day, feeling like they had exhausted all of their options, Diane Kee said she came across the Web site for the International Stem Cell Institute located in Nuevo Progresso, Mexico.
"A whole new world opened up to us," she said.
She read what the Web site had to say, then after speaking with the parent of a child in Florida who had the procedure, the Kees felt it was worth a try for Brodie.
"I was very skeptical," said Kayla Kee. "I thought, 'Oh my gosh - am I really about to do this?'"
Being very apprehensive, the Kees took a leap of faith and left for Nuevo Progresso with $10,000 to pay for Brodie's placental stem cell therapy treatment.
Nuevo Progress is located just across the southern tip of Texas in Mexico. The Kees actually stayed at a hotel in McAllen, Texas.
The Kees admit it was a little scary. There they were, going into a foreign country that has a violent reputation, while carrying a cashier's check.
They found that the International Stem Cell Institute is a very small operation made up of one doctor, a nurse and an office manager. Again, not very reassuring.
But once they met Rita Alexander, the office manager, and Dr. Gonzalez, they knew Brodie was in good hands.
"He was very sweet. Before the procedure, he made sure we didn't have any other questions," said Kayla. "You could see in his eyes that he really cared."
Although some of the equipment looked a little dated, the Kees said the office was very clean and the staff was very friendly.
Adam said Alexander told them that the worst that could happen was that nothing would happen, but the best that could happen was that they would see some sort of improvement in Brodie - and they have.
The entire procedure took only about a half-hour to complete. Brodie had four 1/4-inch incisions made - one in each arm and leg and one in his stomach. In the incision, Gonzalez placed placental and umbilical cord tissue containing stem cells. He then closed the incisions and the procedure was over. He used a local anesthetic for each incision and Brodie was awake the entire time, smiling and happy, his parents said.
Before the treatment, Brodie was not able to lie on his stomach. Adam Kee said his muscles would become very tense and he would arch his back, bowed up like a banana.
"I could tell he was in pain," said Kayla Kee. But ever since the treatment, Brodie has not had one episode of back arching and can even lie on his stomach now.
The Kees said they started noticing improvements in about two weeks.
"It was almost overnight," Adam Kee said.
Brodie had the procedure done last St. Patrick's Day, and his parents said he is a completely different child now.
Before Brodie had the stem cells placed into his stomach, he used to projectile vomit and couldn't keep any food down.
But now, his mother said he's eating well and has put on weight.
The Kees said they want to emphasize that the stem cells used for Brodie's treatment came from placental and umbilical cord tissue, not embryonic stem cells.
Diane Kee said the tissue used in the procedure goes through extensive testing, and because it does not have a blood type, stem cell treatment is not like an organ transplant - it is universal.
The Kees said that stem cell treatment is something that can be multiple times, depending on the illness being treated. For example, if someone has a degenerative disease, like rheumatoid arthritis, the patient must go back for follow-up treatments in order to maintain a certain level of health. If the disease is non-degenerative, like cerebral palsy, the patient can keep going back for treatment and hopefully continue getting positive results until the patient has reached full potential.
The Kees plan on returning to either Mexico or possibly Germany to continue Brodie's treatment.
Unfortunately the stem cell treatment and the trips involved are very expensive, and for two college students, it's more than just a financial stretch. That is why the Kees are planning several fundraising events in the future.
On Oct. 23, the Civitan Club is hosting a basket bingo at the Moose Lodge in Martinsburg. Diane Kee said she has a lot of Longaberger baskets she is donating to the cause.
Adam Kee said he went to high school with Nate Sowers, quarterback for the West Virginia Mountaineers, and he has given him three footballs to be signed by Noel Devine and other players on the team, that he will then raffle off.
The Kees hope the community fundraising efforts will help them pay for Brodie's treatment and travel costs.
When it comes to stem cell research, "new things are happening every day," said Diane Kee.
Even though patients might have to go out of the country at this point to seek treatment, the Kees want the community to know there are options out there for people struggling with a variety of diseases.
"I don't want people to hesitate because they're scared," said Kayla Kee.
As Diane Kee said, "We took a leap of faith," and it has certainly paid off.
18 August 2009
Writing for This Publication
It hardly seems possible that I have been writing for Audacity Magazine for well over a year, now. Every article I have written has been a new challenge. Every article, I have written, has been as different as the article before. And every article I write comes from a place of understanding, compassion, and a sincere honesty to enlighten the public. I would definitely have to say, however, that they have all been like every other article in this magazine; connected with the one purpose of exploring the daily lives and feelings of the disabled community.
In a big, way, attempts have never been made to move beyond daily living skills, to understand and explore the other aspects of our lives. Thus, these articles, which I have written, have been crafted, created, and revealed to the public so that light may be shed. I have seen articles here, on everything from learning to drive, to romance, travel, and remembering the great leasers of our past. I don’t know other than blogs, of a place, in which the great leaders of our community could gather together and express exactly what was on their minds. This is invaluable, because it reminds all of us that we are not ever alone.
My experience, writing for Audacity Magazine, has not only made me more determined to move forward with my own life, but to experience writing for a prestigious magazine, when at one time, three and a half decades ago, I could not even form a constructive sentence by myself. To be accepted by Natashasa, has not only been a powerful experience for me, but it has reminded me that I was right! I clung to the belief that I could learn, and I did. I clung to the belief that I had a right to an education and I got one. And, I clung to the awareness that I was going to make a mark on this world. And, just like all of you, I have! I have determined, in the depths of myself that, no one was going to define my personhood. No one was going to tell me, or make me believe that I was less than what I was. No one was going to take away the healthy self-esteem and autonomy I fought for. But writing for this magazine has taken me a step further. Each time, in every way, that I write another article, for this magazine; I am reminded of my own progress, and, I am reminded of all the other valuable gifts I have to share with the world.
In a big, way, attempts have never been made to move beyond daily living skills, to understand and explore the other aspects of our lives. Thus, these articles, which I have written, have been crafted, created, and revealed to the public so that light may be shed. I have seen articles here, on everything from learning to drive, to romance, travel, and remembering the great leasers of our past. I don’t know other than blogs, of a place, in which the great leaders of our community could gather together and express exactly what was on their minds. This is invaluable, because it reminds all of us that we are not ever alone.
My experience, writing for Audacity Magazine, has not only made me more determined to move forward with my own life, but to experience writing for a prestigious magazine, when at one time, three and a half decades ago, I could not even form a constructive sentence by myself. To be accepted by Natashasa, has not only been a powerful experience for me, but it has reminded me that I was right! I clung to the belief that I could learn, and I did. I clung to the belief that I had a right to an education and I got one. And, I clung to the awareness that I was going to make a mark on this world. And, just like all of you, I have! I have determined, in the depths of myself that, no one was going to define my personhood. No one was going to tell me, or make me believe that I was less than what I was. No one was going to take away the healthy self-esteem and autonomy I fought for. But writing for this magazine has taken me a step further. Each time, in every way, that I write another article, for this magazine; I am reminded of my own progress, and, I am reminded of all the other valuable gifts I have to share with the world.
13 August 2009
New Ultra-Portable Speech Device Marries Comprehensive Communication with Mainstream Technology
PITTSBURGH, Aug. 10 /PRNewswire/ -- DynaVox Mayer-Johnson, the world's leading provider of communication and education solutions for individuals with speech, language and learning disabilities, today announced the DynaVox Xpress. The Xpress sets a new standard for hand-held speech solutions by bringing together comprehensive augmentative and alternative communication (AAC) tools with a variety of mainstream communication features.
An innovative, sleek and extremely portable device, the Xpress delivers powerful communication capabilities for individuals living with stroke, autism, Down syndrome, traumatic brain injury, aphasia, ALS, and apraxia of speech.
This integration allows for robust communication in virtually any situation, and:
Enables mobility and creates confidence. The Xpress is so small it can be held in one hand or two, and can easily be carried in a pocket or purse. With its discreet design, the Xpress allows augmented communicators to blend in with the crowd and still speak their minds. Touch screen technology never before available in a speech device creates a compelling visual experience, and allows touching or "sweeping" to access more content quickly with fingers or thumbs.
Takes AAC technology to new heights. With multiple connectivity options such as Wi-Fi for internet and email access, Bluetooth, and infrared remote control, the Xpress offers unparalleled opportunities for communication. Multimedia tools such as MP3 and video players allow Xpress users to share their personalities in new ways.
Stands up to the demands of daily life. The Xpress is made of rugged magnesium and uses Flash memory to withstand the stresses of life. Swappable batteries, or an extended battery, ensure that Xpress users have the power they need to keep the conversation going all day.
Makes every voice - and every emotion - heard. Twin front-firing speakers allow Xpress users to be heard in virtually any environment. The new voices included with the Xpress are natural-sounding and take communication to the next level by adding emotion - laughter, crying, shouting and whispers.
Preserves familiar content. Existing DynaVox customers and their care teams will recognize the powerful InterAACT language framework designed to meet the communication needs of individuals regardless of age or ability level. Thousands of pre-programmed pages minimize the need for programming.
Includes comprehensive DynaVox Mayer-Johnson support. Xpress users and their care teams will have access to the full-range of DynaVox Mayer-Johnson's pre- and post-purchase support services including funding assistance, sales support, and technical support. The Xpress also gives the user one-touch access to technical support, where DynaVox personnel can remotely access the device and assist the user.
"Our clients told us they wanted a highly portable solution without sacrificing communication functionality," said Ed Donnelly, CEO of DynaVox Mayer-Johnson. "The Xpress accomplishes this objective, and delivers a quantum technological step forward, in a device that looks and feels like mainstream technology. We are excited to be introducing the most transformative speech device ever to the AAC community."
The Xpress will begin shipping to customers in late August 2009. Funding is available through Medicare, Medicaid and private health insurance providers.
About DynaVox Mayer-Johnson
DynaVox Mayer-Johnson develops a range of speech communication and education solutions designed to help children and adults challenged by significant speech, language and learning disabilities make meaningful connections and participate in the home, classroom and the community. The company's DynaVox line of speech communication devices gives a voice to the millions of people who are unable to use speech as their primary means of communication due to the effects of conditions such as amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease), stroke, traumatic brain injury, cerebral palsy, Parkinson's Disease, autism and mental retardation. The Mayer-Johnson line of print-based and on-screen education products engage students in the learning process and support academic achievement. Driven by a strong entrepreneurial culture, the company develops technology-based products and offers an extensive customer support program to assist individuals as well as their families and support professionals. For more information about DynaVox Mayer-Johnson, visit www.dynavoxtech.com.
SOURCE DynaVox Mayer-Johnson
An innovative, sleek and extremely portable device, the Xpress delivers powerful communication capabilities for individuals living with stroke, autism, Down syndrome, traumatic brain injury, aphasia, ALS, and apraxia of speech.
This integration allows for robust communication in virtually any situation, and:
Enables mobility and creates confidence. The Xpress is so small it can be held in one hand or two, and can easily be carried in a pocket or purse. With its discreet design, the Xpress allows augmented communicators to blend in with the crowd and still speak their minds. Touch screen technology never before available in a speech device creates a compelling visual experience, and allows touching or "sweeping" to access more content quickly with fingers or thumbs.
Takes AAC technology to new heights. With multiple connectivity options such as Wi-Fi for internet and email access, Bluetooth, and infrared remote control, the Xpress offers unparalleled opportunities for communication. Multimedia tools such as MP3 and video players allow Xpress users to share their personalities in new ways.
Stands up to the demands of daily life. The Xpress is made of rugged magnesium and uses Flash memory to withstand the stresses of life. Swappable batteries, or an extended battery, ensure that Xpress users have the power they need to keep the conversation going all day.
Makes every voice - and every emotion - heard. Twin front-firing speakers allow Xpress users to be heard in virtually any environment. The new voices included with the Xpress are natural-sounding and take communication to the next level by adding emotion - laughter, crying, shouting and whispers.
Preserves familiar content. Existing DynaVox customers and their care teams will recognize the powerful InterAACT language framework designed to meet the communication needs of individuals regardless of age or ability level. Thousands of pre-programmed pages minimize the need for programming.
Includes comprehensive DynaVox Mayer-Johnson support. Xpress users and their care teams will have access to the full-range of DynaVox Mayer-Johnson's pre- and post-purchase support services including funding assistance, sales support, and technical support. The Xpress also gives the user one-touch access to technical support, where DynaVox personnel can remotely access the device and assist the user.
"Our clients told us they wanted a highly portable solution without sacrificing communication functionality," said Ed Donnelly, CEO of DynaVox Mayer-Johnson. "The Xpress accomplishes this objective, and delivers a quantum technological step forward, in a device that looks and feels like mainstream technology. We are excited to be introducing the most transformative speech device ever to the AAC community."
The Xpress will begin shipping to customers in late August 2009. Funding is available through Medicare, Medicaid and private health insurance providers.
About DynaVox Mayer-Johnson
DynaVox Mayer-Johnson develops a range of speech communication and education solutions designed to help children and adults challenged by significant speech, language and learning disabilities make meaningful connections and participate in the home, classroom and the community. The company's DynaVox line of speech communication devices gives a voice to the millions of people who are unable to use speech as their primary means of communication due to the effects of conditions such as amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease), stroke, traumatic brain injury, cerebral palsy, Parkinson's Disease, autism and mental retardation. The Mayer-Johnson line of print-based and on-screen education products engage students in the learning process and support academic achievement. Driven by a strong entrepreneurial culture, the company develops technology-based products and offers an extensive customer support program to assist individuals as well as their families and support professionals. For more information about DynaVox Mayer-Johnson, visit www.dynavoxtech.com.
SOURCE DynaVox Mayer-Johnson
07 August 2009
Asperger’s Syndrome, on Screen and in Life
By NEIL AMDUR
The three new movies would seem to have little in common: a romantic comedy about Upper West Side singles, a biopic about a noted animal science professor, and an animated film about an extended pen-pal relationship.
But all three revolve around Asperger’s syndrome, the complex and mysterious neurological disorder linked to autism. Their nearly simultaneous appearance — two open this summer, and the third is planned for next year — underscores how much Asperger’s and high-functioning autism have expanded in the public consciousness since Dustin Hoffman’s portrayal of an autistic savant in “Rain Man” 21 years ago.
“The more I learned about Asperger’s,” said Max Mayer, the writer and director of the romance, “Adam,” which opened last week, “the better metaphor it felt like for the condition of all of us in terms of a desire for connection to other people.”
People with Asperger’s may have superior intelligence and verbal skills, and they often have an obsessive interest in a particular topic (astronomy, in the case of the title character in “Adam,” played by Hugh Dancy). But they tend to be self-defeatingly awkward in social situations, and romantic relationships can leave them at sea.
The syndrome is generally considered a high-functioning form of autism, which in recent years has been diagnosed in more and more children. While the reasons for the explosion in diagnoses are unclear, increased awareness may be part of the explanation, and one reason for the growth in awareness is the rise of online parent communities.
Parents are “willing to get out there and talk about it,” said Dr. Fred R. Volkmar, director of the Yale Child Study Center in New Haven and a leading expert on Asperger’s and the autism spectrum.
“If you go on the Internet,” he added, “you will discover there are all these people trying to connect with each other online.”
Mr. Mayer, 54, grew up on the Upper West Side and was interested in developmental psychology before being drawn into theater and film. He says the inspiration for “Adam” came when he heard a radio interview about Asperger’s while driving in California and became so “emotionally involved” that he had to pull off the road.
The movie was awarded this year’s Alfred P. Sloan Prize at the Sundance festival, for outstanding feature film focusing on science and technology. It is being distributed by Fox Searchlight Pictures, whose recent credits include “Little Miss Sunshine,” “Juno” and last year’s Oscar winner for best picture, “Slumdog Millionaire.”
Mr. Dancy plays a young man with Asperger’s who is left to fend for himself after his father dies. One day a woman played by Rose Byrne — a “neurotypical,” as people with Asperger’s call almost everyone else — moves into the apartment upstairs. Romance ensues, along with misunderstanding and confusion.
“Adam is about life, not his disability,” said Jonathan Kaufman, the founder of the Manhattan-based consulting agency DisabilityWorks Inc., who worked as a technical adviser on the film. “It uses his Asperger’s as the lens that colors his life, not the central focal point. It’s about relationships, love, family. The illness is not separate from the person.”
Mr. Kaufman, who was born with cerebral palsy, founded DisabilityWorks nine years ago to help corporations and agencies develop ways to improve the quality of life for people with disabilities. He also served as an adviser on an HBO film about Temple Grandin, a woman with high-functioning autism who became a professor at Colorado State University and a pioneering designer of humane livestock facilities. That film, starring Claire Danes, is to make its debut in 2010.
Members of the Sloan Prize jury praised “Adam” as lifelike and believable. “The portrayal of someone who is enthusiastic about science rather than dismissed as geeky was very genuine,” said Fran Bagenal, a professor of astrophysical and planetary sciences at the University of Colorado.
And Raymond F. Gesteland, a professor of human genetics at the University of Utah, said “ ‘Adam’ will help the rest of the world look at Asperger’s with a new realistic light.”
Dr. Gesteland also screened the animated feature, “Mary and Max,” which opened the Sundance festival. It deals with the pen-pal relationship of a 44-year-old New Yorker, who has Asperger’s and lives on chocolate hot dogs, and a lonely 8-year-old Australian girl. The motivation for the film came from hundreds of letters, spanning 20 years, between Adam Elliot, a young Australian, and a middle-age pen pal in Staten Island who he later learned had Asperger’s.
“I wanted to tell a film about my friend,” Mr. Elliot, now 37 and an award-winning writer and director, said in a phone interview from Australia, where “Mary and Max” has grossed more than $1 million since its opening in April. “Asperger’s is a part of him; it’s the way he’s hot-wired. If I had ignored him, it would have offended him.”
Besides the movies about Asperger’s there are several new books, adding to a growing library that includes “Pretending to Be Normal” by Liane Holliday Willey, which is mentioned in “Adam,” and the best-selling memoir “Look Me in the Eye,” by John Elder Robison. Jessica Kingsley Publishers released three books this spring: “22 Things a Woman Must Know If She Loves a Man With Asperger’s,” by Rudy Simone; “The Love-Shy Survival Guide,” by Talmer Shockley; and “The Imprinted Brain,” by Christopher Babcock.
Ms. Simone, 45, who lives in upstate New York, was dating someone with Asperger’s several years ago when she learned that she, too, had the disorder. In an interview, she said she had just completed a second book, “Working With Asperger’s,” which she said she hoped would help people with the syndrome in the workplace. And she has begun researching a third about Asperger’s and females, a subject that she says is underreported and misunderstood. While four times as many boys as girls get the diagnosis, she said, “I’m absolutely certain that’s incorrect.”
Mr. Kaufman, of DisabilityWorks, said people were becoming more tolerant of Asperger’s “because it is front and center.”
“Awareness has been raised, and it’s fascinating to me,” he continued. “Is it acceptance? You could make the argument ‘yes.’ It is true that as it becomes the work of daily life, as we see people who have Asperger’s, it’s becoming less of a threat and part of our culture.”
The three new movies would seem to have little in common: a romantic comedy about Upper West Side singles, a biopic about a noted animal science professor, and an animated film about an extended pen-pal relationship.
But all three revolve around Asperger’s syndrome, the complex and mysterious neurological disorder linked to autism. Their nearly simultaneous appearance — two open this summer, and the third is planned for next year — underscores how much Asperger’s and high-functioning autism have expanded in the public consciousness since Dustin Hoffman’s portrayal of an autistic savant in “Rain Man” 21 years ago.
“The more I learned about Asperger’s,” said Max Mayer, the writer and director of the romance, “Adam,” which opened last week, “the better metaphor it felt like for the condition of all of us in terms of a desire for connection to other people.”
People with Asperger’s may have superior intelligence and verbal skills, and they often have an obsessive interest in a particular topic (astronomy, in the case of the title character in “Adam,” played by Hugh Dancy). But they tend to be self-defeatingly awkward in social situations, and romantic relationships can leave them at sea.
The syndrome is generally considered a high-functioning form of autism, which in recent years has been diagnosed in more and more children. While the reasons for the explosion in diagnoses are unclear, increased awareness may be part of the explanation, and one reason for the growth in awareness is the rise of online parent communities.
Parents are “willing to get out there and talk about it,” said Dr. Fred R. Volkmar, director of the Yale Child Study Center in New Haven and a leading expert on Asperger’s and the autism spectrum.
“If you go on the Internet,” he added, “you will discover there are all these people trying to connect with each other online.”
Mr. Mayer, 54, grew up on the Upper West Side and was interested in developmental psychology before being drawn into theater and film. He says the inspiration for “Adam” came when he heard a radio interview about Asperger’s while driving in California and became so “emotionally involved” that he had to pull off the road.
The movie was awarded this year’s Alfred P. Sloan Prize at the Sundance festival, for outstanding feature film focusing on science and technology. It is being distributed by Fox Searchlight Pictures, whose recent credits include “Little Miss Sunshine,” “Juno” and last year’s Oscar winner for best picture, “Slumdog Millionaire.”
Mr. Dancy plays a young man with Asperger’s who is left to fend for himself after his father dies. One day a woman played by Rose Byrne — a “neurotypical,” as people with Asperger’s call almost everyone else — moves into the apartment upstairs. Romance ensues, along with misunderstanding and confusion.
“Adam is about life, not his disability,” said Jonathan Kaufman, the founder of the Manhattan-based consulting agency DisabilityWorks Inc., who worked as a technical adviser on the film. “It uses his Asperger’s as the lens that colors his life, not the central focal point. It’s about relationships, love, family. The illness is not separate from the person.”
Mr. Kaufman, who was born with cerebral palsy, founded DisabilityWorks nine years ago to help corporations and agencies develop ways to improve the quality of life for people with disabilities. He also served as an adviser on an HBO film about Temple Grandin, a woman with high-functioning autism who became a professor at Colorado State University and a pioneering designer of humane livestock facilities. That film, starring Claire Danes, is to make its debut in 2010.
Members of the Sloan Prize jury praised “Adam” as lifelike and believable. “The portrayal of someone who is enthusiastic about science rather than dismissed as geeky was very genuine,” said Fran Bagenal, a professor of astrophysical and planetary sciences at the University of Colorado.
And Raymond F. Gesteland, a professor of human genetics at the University of Utah, said “ ‘Adam’ will help the rest of the world look at Asperger’s with a new realistic light.”
Dr. Gesteland also screened the animated feature, “Mary and Max,” which opened the Sundance festival. It deals with the pen-pal relationship of a 44-year-old New Yorker, who has Asperger’s and lives on chocolate hot dogs, and a lonely 8-year-old Australian girl. The motivation for the film came from hundreds of letters, spanning 20 years, between Adam Elliot, a young Australian, and a middle-age pen pal in Staten Island who he later learned had Asperger’s.
“I wanted to tell a film about my friend,” Mr. Elliot, now 37 and an award-winning writer and director, said in a phone interview from Australia, where “Mary and Max” has grossed more than $1 million since its opening in April. “Asperger’s is a part of him; it’s the way he’s hot-wired. If I had ignored him, it would have offended him.”
Besides the movies about Asperger’s there are several new books, adding to a growing library that includes “Pretending to Be Normal” by Liane Holliday Willey, which is mentioned in “Adam,” and the best-selling memoir “Look Me in the Eye,” by John Elder Robison. Jessica Kingsley Publishers released three books this spring: “22 Things a Woman Must Know If She Loves a Man With Asperger’s,” by Rudy Simone; “The Love-Shy Survival Guide,” by Talmer Shockley; and “The Imprinted Brain,” by Christopher Babcock.
Ms. Simone, 45, who lives in upstate New York, was dating someone with Asperger’s several years ago when she learned that she, too, had the disorder. In an interview, she said she had just completed a second book, “Working With Asperger’s,” which she said she hoped would help people with the syndrome in the workplace. And she has begun researching a third about Asperger’s and females, a subject that she says is underreported and misunderstood. While four times as many boys as girls get the diagnosis, she said, “I’m absolutely certain that’s incorrect.”
Mr. Kaufman, of DisabilityWorks, said people were becoming more tolerant of Asperger’s “because it is front and center.”
“Awareness has been raised, and it’s fascinating to me,” he continued. “Is it acceptance? You could make the argument ‘yes.’ It is true that as it becomes the work of daily life, as we see people who have Asperger’s, it’s becoming less of a threat and part of our culture.”
Fighting for her autistic sons
Watch the film
Hayley Moran from Wythall in Worcestershire wants to make her home safe for her two young sons, who have autism.
But she is struggling to find the £30,000 she needs because the boys don't qualify for grants unless they are registered as disabled.
The National Autistic Society says that thousands of families are struggling to get their needs properly recognised - because the people who assess their needs haven't been properly trained, and they have to fight their way through acres of red tape.
You can hear Hayley talking to Victoria Derbyshire on Radio 5 live on Friday 7 August from 10 am. Or catch up later at Victoria's blog .
Hayley Moran from Wythall in Worcestershire wants to make her home safe for her two young sons, who have autism.
But she is struggling to find the £30,000 she needs because the boys don't qualify for grants unless they are registered as disabled.
The National Autistic Society says that thousands of families are struggling to get their needs properly recognised - because the people who assess their needs haven't been properly trained, and they have to fight their way through acres of red tape.
You can hear Hayley talking to Victoria Derbyshire on Radio 5 live on Friday 7 August from 10 am. Or catch up later at Victoria's blog .
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